Support: tALKING TO your child ABOUT THEIR DIAGNOSIS

Deciding how/what/when to tell your child about their diagnosis can be one of the most difficult issues faced by the families of children with Usher syndrome.

The following advice has been found to be useful by parents of young children with Usher syndrome in discussing the diagnosis within their families;

Talk about it little and often (rather than one big 'sit down' event) so that Usher syndrome becomes a regular part of family life.

Give them examples of people using a variety of aids to help with their sensory loss (e.g. if you see someone out with a guide dog, explain what they are doing), so they can access practical examples they can relate to.

Use language and concepts appropriate for your child's age. Many parents choose to talk about their child's vision 'changing' rather than talking about eventual vision loss. Again, it can be helpful to talk about some of the 'tools' available when vision changes happen (e.g. guide dogs).

In many cases, your child will already have experience of adapting to changes with their hearing, long before they experience changes in their vision. Use this experience to their advantage, e.g. "You know how you use your hearing aids/implants etc. to help you hear? Well, if your vision changes we will find other ways to help you".

Answer your child's questions honestly. It is fine to say that you don't know the answer if you don't. You may be able to make a plan with your child to find out the answer, by contacting one of your professional team, or asking other parents via Usher Kids UK (Facebook page or Contact Us).

There are some useful resources available to help you decide how you want to talk about Usher syndrome in your family. Sense has created a guide to help parents in talking to their children about Usher syndrome. The Royal National Institute of Blind People has also created a booklet to provide parents with advice around this topic. Finally, Guide Dogs UK also has an information sheet on the subject.